Caregiver Tips for Special Family Events Throughout the Year

With just a few weeks left to the 2013 holiday season, there may be a few more special occasions for families who have a loved one living with dementia to gather together. We’ve discovered a list of tips from the Alzheimer’s Association to make these occasions successful and happy, but since they are as relevant to any family celebration at any point in the year as they are to traditional year-end events, we felt it would be worthwhile to share with readers.

1. Adjust your expectations of yourself, the caregiver. Only agree to take on what you can reasonably manage, and ask for help. Holidays, birthdays, and anniversaries often come with traditions and expectations from family members, but try to ask for people to be flexible. Perhaps you can ask someone else to host the holiday gathering this year.
2. Let family and friends know what to expect. If they haven’t seen the person with dementia in a few months or a year, make sure they know.
3. If a family gathering is large, assign a friend or relative (or two) to be a “buddy” to the person with dementia. The buddies can take turns guiding the person with dementia through what is expected at the gathering and making sure the person with dementia’s needs are being met.
4. Involve the person with the diagnosis in tasks that they can succeed in. Maybe he or she can no longer prepare the entire meal, but perhaps the person can rinse the vegetables, set the table or clean silverware and still feel included in the preparation.
5. Try to schedule only one activity or outing a day. Allow the person to rest either before or after the event. If you have an especially busy day, plan for the next day to be one of rest and relaxation for both the person with dementia and you.
6. Take time for yourself. If you have a holiday tradition that is important to you, such as attending a musical performance with your grandchildren, arrange for home care so you can continue to enjoy the things you love.

Visit the Alzheimer Association website for a fuller list of holiday season tips as well as tips for winter and spring enjoyment.

Leader in Advancing Alzheimer’s Research Reviews Challenges Ahead

Dr. Neil Buckholtz, National Institute on Aging

Dr. Neil Buckholtz, director of the Division of Neuroscience at the National Institute on Aging (NIH), explains that a long, difficult journey lies ahead for researchers worldwide striving to understand Alzheimer’s disease, develop better treatments to slow its progress and ultimately find a cure. Eventually, he says, “we hope to be able to delay the onset or prevent Alzheimer’s disease entirely.”

In a recent fascinating interview, Dr. Buckholtz lays out with precision the achievements to date and the goals and challenges for research professionals in academia, government and industry. Go to http://1.usa.gov/17PLIJM to read or hear “A conversation with… Dr. Neil Buckholtz.”

Readers may be interested in learning that Dr. Buckholtz participated in the May 2013 “Remember This” Symposium sponsored by the Hurwitz Lecture Fund at the Charles E. Smith Life Communities. The topic: Alzheimer’s Disease: Current Understanding and New Directions.

“The new national push on Alzheimer’s has re-energized all of us, I think, and has elevated research on Alzheimer’s in the national conversation about aging and health.”

Caregiver Guilt: What to Do If You Feel It

If I had to name the one emotion I hear about most frequently from family caregivers who assist loved ones living with dementia, its guilt. In fact these caregivers are pained just to have to admit this and share their thoughts with me.

Here’s what’s overwhelming: the unremitting stress that comes with the reality of their situation, their heavy responsibilities and the difficulty they face in juggling care with everything else in their lives, e.g., children, husband, job, and their own personal and mental health needs. Where does guilt come in? When, no matter how exhausted you are, “there are most likely times when you tell yourself that you could do better,” says Dr. Alexis Abramson on her blog, The Dr. Alexis Blog.

I’ve recently come across one of her posts, “10 Tips to Help You Say Goodbye to Caregiver Guilt,” which constructively addresses the guilt dilemma. Here are the tips, but I suggest you go to the actual blog itself for full elaboration, insights and suggestions. By the way, you’ll find other excellent advice on the blog…as well as a link to obtaining Dr. Abramson’s book, The Caregiver’s Survival Handbook.

1. Acknowledge your feelings.
2. Think quality, not quantity
3. Establish priorities
4. Set limits
5. Redefine your concept of caring.
6. Act from love, not from a sense of debt.
7. Forgive and seek forgiveness.
8. Foster their independence.
9. Face the facts.
10. Don’t succumb to peer pressure.

Your Second Caregiver Responsibility: Take Care of Yourself!

As director of memory care programs at Charles E. Smith Life Communities, I assist in developing stimulating programming for residents living with memory care issues. Recently, I was chatting with the family member of one of these residents and suddenly refocused the conversation to the gentleman’s own wellbeing by asking, “So what are you doing for yourself today?”

He scratched his head and had difficulty coming up with a quick answer. Why? Well, he had never considered himself in the equation of care. Finally he replied that he was not coming back that evening and in fact had just decided to decrease his visits to mornings only.

We started to discuss his typical day. Every morning and afternoon he attends synagogue services. He then tries to arrive at our residence around 9 a.m. to be with his wife; he stays to have lunch with her and finally leaves around 1 p.m. Back at his home, he attends to personal affairs. That’s it. As far as doing anything for himself that might be fun, interesting, stimulating, or nourishing to body and soul—all in an effort to relieve stress and prevent caregiver burnout, he has nothing on the schedule.

If this describes your life as a caregiver, there’s abundant practical advice out there to help you help yourself. To start the ball rolling, go to the Mayo Clinic website to read “Caregiver stress: Tips for taking care of yourself.” http://www.mayoclinic.com/health/caregiver-stress/MY01231.

Let’s Get Past the Stigma of Dementia

Photo of President Ronald Reagan and Margaret Thatcher by Gerald Penny/Associated Press

Paula Span, in a recent article for her insightful New York Times blog, The New Old Age, considers the terrible stigma attached to dementia: “Alzheimer’s and other forms of dementia, to this day, carry a stigma that most other diseases—heart failure, for example—do not.”

To pursue her point, Span compares how the families of President Ronald Reagan and Britain’s Margaret Thatcher revealed diagnosis of the condition in both world leaders to the public. In Reagan’s case, the disclosure was contained in an open handwritten letter; Thatcher’s family, on the other hand, chose to avoid using the term dementia.

In my work at Charles E. Smith Life Communities, I continually observe how families differ in how they share the reality of a loved one’s dementia with friends and relatives. They seem to feel uncomfortable, embarrassed or pressed to explain why this has happened to someone long recognized for being so smart, vital, and competent.  

But, Span hits the nail on the head when she writes this: “We know that dementia will become an increasingly common condition in coming years, that it’s a terminal disease which doesn’t respect the public stature or intellectual accomplishments of its victims (our emphasis), that it can cause families to grieve for the people they’ve lost long before they die.”

My advice is to be honest, willing to discuss the diagnosis with friends and relatives, and ready to shift the focus to the lasting abilities, not disabilities. As a society, this is what we must do.

Read “A Singular Life, an All Too Common End” by Paula Span at http://nyti.ms/1bCIDuM .

Manage Stress to Alleviate Dementia Symptoms

David R. Larsen, MFHD

We know from evidence that unremitting stress heightens the risk of developing dementia, but what may be less obvious is the fact that once someone has actually been diagnosed with this unforgiving illness, meditation as a stress management tool can help to alleviate behavioral symptoms that include aggression, banging, yelling and anxiety.

I’ve had the privilege of meeting Alzheimer’s researcher David R. Larsen, MFHD, whose career has been devoted to studying and sharing insights about stress and brain health. He has impressed upon me the value of “meditation, mindfulness and other forms of autogenic relaxation” in making individuals living with dementia more comfortable. As a result, I’m working with the massage therapist at the Hebrew Home of Greater Washington and Cohen-Rosen House, our memory care residence, on ways to incorporate these approaches to stress management into the care of our residents. Here are some easy meditation instructions offered by Mr. Larsen in his newsletter Brain Health News for June 2013 that you also might find useful:

Start by finding a soft comfortable chair and then do some tensing and releasing (or stretching) of muscle groups, taking three slow, deep breaths (much like yawning). Count to 4 as you breathe in and to 5 as you breathe out.

Next, repeat to yourself silently and 3 times the following self-statements:

• I feel quite quiet. . . I am easily relaxed.
• My right arm feels heavy and relaxed. . . My left arm feels heavy and relaxed. . . My arms feel heavy and relaxed.
• My right leg feels heavy and relaxed. . . My left leg feels heavy and relaxed. . . My arms and legs feel heavy and relaxed.
• My hips and stomach are quiet and relaxed. . . My shoulders are heavy and relaxed.
• My breathing is calm and regular . . . My face is smooth and quiet.
• I am beginning to feel quite relaxed.

Say the phrases in a quiet, thoughtful way. Pause and notice how you feel. Focus on your feelings for two or three breaths. Practice each statement until you feel their full relaxing effect.

If you have time, it will also help if you can then vividly imagine yourself in some quiet, peaceful place or vacation site, in rich sensory detail.

The more often you return your body to this state of restfulness, the easier and faster the process will become, and the more energy and self-control you will experience. It is suggested that you do this exercise at least twice a day.

Mr. Larson invites readers to email him at DavidRJL@aol.com for a copy of his newsletter.

Spring Fever

Regardless of the time of year, it can be a challenge to come up with meaningful activities to do with a person living with dementia. Now that spring has arrived (and summer is around the corner), it’s a great time to explore the outdoors and take advantage of the warmer weather.

When choosing activities, try to identify things the person you are caring for has historically enjoyed, while focusing on his or her abilities and modifying the activity based on their stage of disease. Here are some random tips:

1. Work in the garden together. Sometimes just repotting plants is easy and fun to do.
2. Grab an ice cream cone as a cooling treat.
3. Toss a ball in the yard or park to get some outdoor exercise.
4. Play with pets or visit a zoo.
5. Take a trip to a botanical garden.
6. String Cheerios to hang outside for birds.
7. Have an afternoon tea party outside.
8. Feed the ducks. 

By the way, just because it’s spring doesn’t mean you have to go outside. Simple Indoor activities can be worthwhile too. Consider these ideas:

1. Do some spring cleaning together.
2. Dance!
3. Make homemade lemonade.
4. Look at family photographs.
5. Make a scrapbook.
6. Work on a puzzle together.

Finally, it may be helpful to have activities ready in different rooms of the home so you always have engaging ways to spend time together right at your fingertips.

If your loved one happens to live in a memory care residence, ask staff about their activity schedule so you can arrange your time to visit when something that interests you is happening.

The Power & Magic of Music

Music lifts the spirit—even for individuals living with dementia. I recently came upon a striking video — http://bit.ly/YM9I9G — that shows an expressive arts therapist helping an elderly couple rediscover the joy of music and the intrinsic pleasure of shared moments, despite their both having lost an ability to communicate verbally. As the jaunty music plays, the therapist joins their hands and leads them through simple arm movements in an easy, lighthearted manner. To witness a happy husband and wife relaxed and re-engaged with one another in such an upbeat and beautiful way is nothing short of inspiring. Try using music with your loved one who may be living with dementia and let us know how it goes.

When a Garden is More Than a Garden

  I just had a great conversation with residents at Cohen-Rosen House about the approach of spring and upcoming plans for our garden.

“What should we grow in our garden?” I asked. “What did you grow in your garden?  Fruits, vegetables, herbs?” I explained that everything we grow here can be used in the Cohen-Rosen kitchen and this was greeted with surprise and delight.

The conversation moved on to tomatoes. “Are they a vegetable or fruit?  And what about eggplants: vegetable or fruit?”

This is an encouraging example of how interest and anticipation can arise from a simple discussion of a life-long pleasure.

Caregivers might enjoy reading “Gardens for People with Dementia” at http://bit.ly/Zm7c6a.

The Beauty of Art…as Therapy

   A fascinating article titled Art Therapy Innovation, written by art therapist Erin Partridge, supports what I regularly witness in my work: “Living with dementia does not mean an end to expression and innovation.” Partridge describes a creative project that should be a solid dose of inspiration for anyone – professionals and family members alike – who provides daily care for individuals experiencing cognitive decline. I plan to share this with my own recreation specialists. Check it out at http://bit.ly/12XFP9l.